Old 02-20-2009, 03:42 PM #1 (permalink)
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Default talapanel or Ceftriaxone Stage 3

dear all.

my mum may have the opportunity to enroll in either the talapanel or Ceftriaxone Stage 3 clinical trials in the US.

Since she can only do one at at time, I was wondering if any of you had insight or information about which looks the most promising for slowing the progression of ALS.

I know both have been around for a while and not much has been done up until this point... but the fact that researchers are pushing on and the trials are both in stage 3 is encouraging.

as always your input would be invaluable.

god bless.
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Old 02-20-2009, 06:33 PM #2 (permalink)
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I think I'd try the Talapanel myself based on talks with my Neuro.

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Old 02-20-2009, 08:37 PM #3 (permalink)
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i've been trying to find data on what's been observed with ceftriaxone (rocephine). it was a drug i promoted for 2 years. it has excellent penetration of the blood-brain-barrier. perhaps you can gain access to the location of the data; one arm (part) of the trial measures the amount of ceftriaxone that enters the CSF, based on dosage. the theory of possible neuro-protective attributes is encouraging.

the study of talampanel is good in theory also, in that those with ALS have higher concentrations of glutamine surrounding the neurons. talampanel is a drug that helps with the removal of glutamine. excess glutamine stimulates neuron death.

both trials are experimental, so talk to your neurologist(s) and discuss which is most appropriate. your mom may have conditions that may exclude her from one trial, but not the other.
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Old 02-21-2009, 06:26 PM #4 (permalink)
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thanks both for your replies.

i know the ceftriaxone is an invasive treatment... but this is an aggressive disease and needs must. my mum has been so brave about everything that has happened her.

we just didn't want to 'cut off our nose to spite our face' by accepting a place on one trial if the other were proving even slightly more effective. both neuros i've spoken to aren't too convinced by lithium so we've scrapped that idea in the meantime.

god bless.
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Old 03-01-2009, 05:28 PM #5 (permalink)
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My son should be starting a Talampanel trial this month. It was strongly encouraged by his neurologists over ceftriaxone.

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Old 03-02-2009, 08:14 AM #6 (permalink)
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Hi Vayla. We've opted for the Talampanel too. Now our big fear is that we get a placebo

I've read a few of your posts. I'm sorry that your family is also in this situation. Your son is so young and handsome. However, I keep telling myself that ALS is due a new drug to shake things up a little! Maybe Talampanel could be it
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Old 03-02-2009, 08:21 PM #7 (permalink)
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I understand the "blind" trials. However, with a desease that is terminal, committing to a study that may or may not work anyway, adding the placebo to decrease your odds even more is very frustrating. I know that trials are not designed to help me but are for the greater good. I am normally very altruistic. However, when I am fighting for my life, I would like to get the odds as high as possible.

I am going to do a trial soon. Can anyone point tell me about any sucess stories with any of the latest trials. Also, does anyone know of a way of increasing the chances of not getting placebo. I have much more frustration to rant about (as do we all), but I really just want some help increasing my odds of survival.

Thanks
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Old 03-02-2009, 09:41 PM #8 (permalink)
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SavoringLife.... Mum said the same thing. Any chance to save or prolong life should be a real chance. However, talk with whoever is doing the trials. Sometimes it's 'blind' for a portion of the trial, and then all being well, everyone gets the drug for the remainder of the time. I guess it's risky and these things haven't been tried out on lots of people -- therefore there could be unknown and negative side-effects. In essence, the people getting the placebo might be better off.

Someone told me that in the UK they aren't allowed to use placebos in cases where the disease is terminal, but I'm not sure how true that is. Anyway, it seems like most of the trials are in the US which is why I'm having mum out there.
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Old 03-04-2009, 11:49 AM #9 (permalink)
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Thanks, Good luck. Keep us posted. I will keep posted my progress once I get in a trial. The only possible reason I personally would choose ceftriaxone is because a couple of Doctors (possible quacks) and several people have suggested Lyme. (a long story). I had one positive lyme test (IGeneX). This would kind of kill two birds with one stone as ceftriaxone is an antibiotic used to cure lyme. However, I have read over and over about false lyme hope, have tried a month of cefuroxime (an oral antibiotic), and have ruled out lyme. I have been refered to Johns Hopins ALS clinic and am working on getting an appt.
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Old 03-05-2009, 10:35 AM #10 (permalink)
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I asked our Neuro about Talampanel yesterday, and she is recommending ceftriaxone because it's in Phase 3. The trial is supposed to start at the end of March. Is anyone else going to try it? I'm really confused about why she thinks ceftriaxone instead of Talampanel. Does anyone have any ideas?
And am I sticking my head in the sand thinking that the cure might be within my husband's lifetime?
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Old 03-05-2009, 11:12 AM #11 (permalink)
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Quote:
Originally Posted by tgif View Post
And am I sticking my head in the sand thinking that the cure might be within my husband's lifetime?
well I'm on my way to being diagnosed with MND. I'm only reaching my mid 20's. So I certainly hope so. At least a treatment to slow the progression, or sustain life longer. But I'm sorry you have to experience this with your husband. Bless You.
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Old 03-05-2009, 12:19 PM #12 (permalink)
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Quote:
Originally Posted by tgif View Post
I asked our Neuro about Talampanel yesterday, and she is recommending ceftriaxone because it's in Phase 3. The trial is supposed to start at the end of March. Is anyone else going to try it? I'm really confused about why she thinks ceftriaxone instead of Talampanel. Does anyone have any ideas?
And am I sticking my head in the sand thinking that the cure might be within my husband's lifetime?

talampanel is also in stage three. i've discovered hoping for a cure is what makes ALS bearable.

just a little story from the Guardian (UK newspaper) to make everyone feel better:


Quote:
Across the cloistered courtyard of a southern French seminary college, dressed in a white habit, wimple and navy cardigan, strolled the shy woman known as the "miracle nun". Swinging her arms and striding confidently in her beige loafers in her first public appearance, she was the picture of health.

"It's like a second birth," she smiled "I feel like I've discovered a new body, new limbs." After two years of intense secrecy, Sister Marie-Simon-Pierre, 45, was yesterday revealed to the public as the earthly embodiment of the latest great mystery of the Catholic church. The nun, who knew she wanted to serve Christ from the age of 12 in her northern French village and now works as a nurse for the Little Sisters of Catholic Maternities, is being cited as the living proof that the late Pope John Paul II has healing powers from beyond the grave.

Aix-en-Provence, the southern French city better known for the painter Paul CÚzanne and the writer Emile Zola, is in the limelight once again.

Diagnosed with incurable Parkinson's disease in 2001, two years ago Sister Marie-Simon-Pierre could barely move her left side. She could not write legibly, drive, move around easily and was in such pain she couldn't sleep. So great was her dread of her condition's inevitable degeneration that she could not bear to watch her esteemed Pope John Paul II, also a Parkinson's sufferer, appearing on television in his pope-mobile.

"It reminded me of what I would be in a few years' time, I had to listen to his broadcasts rather than watch them," she said. Her disease worsened after his death, and her whole order prayed for his intervention to ease her suffering. Then one night after scrawling his name on a paper with her trembling hand, she woke up the next day cured. She has spent two years back at work as a maternity nurse with no traces of the disease.

Since 2005, the Catholic church has kept the case quiet, conducting a secret investigation in which it has interviewed around 15 witnesses, including neurologists, university medical professors, a psychiatrist and a hand-writing analyst. Now satisfied that the mysterious recovery is medically inexplicable, the diocese of Aix-en-Provence will on Monday give its dossier to the Vatican. It is up to Pope Benedict XVI to rule whether it is a miracle. If he does, it would put the late John Paul II on the first step to sainthood.

On June 2 2005, two months after the pontiff's death, Marie-Simon-Pierre accepted her condition was so bad that she would have to resign from work. It was a difficult decision, being from a deeply observant Catholic family of five in northern France she had always felt a calling to serve in maternity. Her superior told her not to give up hope. "She asked me to write Jean Paul II on a piece of paper to give me strength. I didn't want to write in front of anyone because I had such difficulties, and if someone was watching me, it would be even harder. But I wrote Jean Paul II. It was almost illegible." Later the nun was "seized by a need to write". It was such an unusual urge that she couldn't even find a pen to hand. She wrote a few lines. "I looked at my writing and thought that's funny, your writing is very readable."

In the morning she was aware of a lack of the usual stiffness and pain. She said she felt an "inner strength". She went to the chapel at 4am, with none of her usual difficulty walking. "I realised that my body was no longer the same. I was convinced that I was cured.

"I went to a sister and showed her my hand. It wasn't shaking. I said John Paul has healed me. She looked at me wide-eyed and we stood in silence."

That day, she was able to work on the maternity ward, assisting a caesarean and registering the baby's birth in her own hand-writing. She stopped taking her daily medication. Five days later her neurologist was stunned by her agility in strolling into his office. He asked her if she had doubled her medication.

Beside Sister Marie-Simon-Pierre at her first media appearance yesterday sat the archbishop of Aix-en-Provence and the priest who headed the inquiry.

On the desk was a box file containing the medical documents, photographs and witness statements that the Aix-en-Provence clergy believe prove an inexplicable recovery has taken place.

To qualify as a miracle the recovery must be sudden, complete and permanent - as well as inexplicable. For an illness such as cancer, the church would take at least 10 years to verify an inexplicable recovery, in case the patient relapsed. But yesterday the diocese said Parkinson's, which was incurable, had no such time requirement.

The Vatican process requires that John Paul's life and writings be studied for its virtues and that a confirmed miracle be attributed to his intercession before he can be beatified - the last formal step before possible sainthood

This weekend Sister Marie-Simon-Pierre is to travel to Rome for ceremonies marking the second anniversary of the pontiff's death and the closure of a church investigation into his life.
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Old 03-05-2009, 12:26 PM #13 (permalink)
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My husband's neuro recommended the ceftriaxone over talampanel for the same reasons. Keep praying for a miracle for your husband, I do for mine and all the others out there.
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Old 03-05-2009, 03:27 PM #14 (permalink)
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Did your neuro tell you when he/she thought the trial would start? Ours is saying the end of this month (hopefully). And thank you, everyone, for your words of encouragement. I needed them today! We have 8 month old twins, and lack of sleep sometimes makes everything seem harder!
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Old 03-10-2010, 08:06 PM #15 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

There are maybe near 200 in the trial now for ceftriaxone with 400 to go. Since I was one of the first I will remain on ceftriaxone till the last person has been on the med for 1 year. This is a great opportunity everything is paid for and the ceftriaxone does seem to have positive change in some of us. I wish the best and pray you receive the ceftriaxone, sending good luck to all of you.
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